It’s hard to believe that so much time has passed since we said “I do,” and yet, when I look at you, I still see the same man who made me laugh, made me feel safe, and made me believe in forever. What I didn’t know then was just how much that “forever” would teach us.
Fourteen years of marriage of growing up together, of figuring life out hand in hand. We’ve built a life full of ordinary moments that mean everything—shared glances across a crowded room, caffeine-fueled mornings, chaotic dinners with the kids, quiet nights when nothing really needed to be said and there are Office episodes to watch. And through all of it, one thing has stayed constant: us.
Staying connected hasn’t always been easy—especially in the seasons when life pulled us in a hundred directions. Work, kids, responsibilities… the noise of life can be loud. With the complexities we have experienced, especially over the past couple years, it would be easy to just fall apart. But somehow, we always found our way back to each other. In the small things. In the effort. In the choice to show up for each other, again and again.
You still make me feel chosen. You still make me feel wanted. And loved. And seen.
You always know how to lighten the mood with a perfectly-timed joke or sarcastic comment, and even when I try not to laugh—you get me every time. You have a way of talking all of us off our proverbial ledge and help us focus on reality. Your mind is sharp, your hands are capable, and I swear, you can fix anything. Whether it’s a broken toy, a car, or a rough day—you’ve got a way of putting things back together.
You’re the kind of dad I always hoped my kids would have—playful, patient, endlessly loving. You have made their childhood magical. They look at you like you hung the moon. And honestly, so do I. This life we have built together is nothing short of a miracle, and it is more than I ever dreamed of.
What I admire most, though, is who you are when no one is watching. Loyal. Ethical. Steadfast. Honest. People underestimate you all the time—and you just keep showing up, proving them wrong. There are so many little things that you do to improve the world around you that no one even knows you are doing. But I see you.
Thank you for being my steady when life gets messy. For showing up, not just as my husband, but as my teammate, and my safe place.
There’s a quiet kind of magic in a love that grows deeper over time. It doesn’t need grand gestures or perfect moments. It just needs care, commitment, and a whole lot of grace. And somehow, we’ve found all of that—together.
Fourteen years in, and I still choose you. I choose this life. I choose us.
Happy anniversary, my love. Here’s to every year that brought us closer—and to every year still to come.
It has been 4 months since Tom left the hospital with hope after a diagnosis.
There was so much relief then believing there was a way forward.
Since his hospice stay, he is halfway back to his original weight. It is unclear if he will ever be able to gain it all back.
He is still at the hospital constantly between doctor’s and dentists visits 3-4 times a week. They are mostly just check ups with various specialists. About every two weeks he has rotations of scans with MRIs, PET scans, and labs. The days he has to do labs are never ideal because they make him take a radioactive dye that make him feel like he has the flu for about 24 hours afterwards. Then, once every few months he goes in for chemotherapy.
The good news is that something is working because his most recent scan on his lungs have shown that the growths have been cut in half.
He has had nine root canals, four tooth replacements, and will lose his back teeth due to the damage to his jawbone because of all the inflammation that has occurred. There is nothing to screw implants to, and his jaw will need surgery to clean up what they can and remove a rogue wisdom tooth.
Fortunately his heartburn that was tearing his esophagus up and most of his food sensitivity has subsided. This may be due to the myriad of medications that he is on. His bedside table looks like a pharmacy counter. While these medications clearly are helping and keeping him alive, they are not perfect and can cause other symptoms that we have to monitor. One being an increase in blood pressure that he now is on other medication for. Another being the likelihood that he will have osteoporosis. These medication complications are part of the reason he has so many doctor’s appointments so they can put in preventative measures as they watch his body react over time.
It is funny to think that it took us many many months to get a doctor to pay attention to his symptoms. Now when he goes, it is like they roll out the red carpet for him. Doctors are clamoring to be part of his treatment plan due to the rarity of his diagnosis. He went from begging and crying for attention, to now getting personal calls from the heads of departments.
We have had to come to grips with the fact that he may never fully recover. So while he looks much better and seems to be healed from the outside, there are still a lot of symptoms that he has, and some that have returned over the last month.
I mentioned the attention and procedures he has had on his teeth. He is usually in excruciating pain due to the inflammation still occurring in his gums. If you have ever had tooth pain, imagine the agony of having it all over your mouth months on end. Unbearable.
Recently, he started throwing up consistently again. He typically only has one meal a day, and never really gets a full meal even at that. While it doesn’t seem to be at the level where he is losing weight, he also can’t seem to gain it. His migraines have also returned, and there is not a day that goes by that he doesn’t wake up with one.
He has absolutely no immune system, which has us all on edge since a sickness can roll through our house for weeks at a time. He is on medication to help combat this, but there are side affects.
Like feeling lethargic all the time. He never feels fully rested. When he is awake, he feels as though he has been driving for 2-3 days: stiff and exhausted. He is still in pain constantly, and his threshold is one I cannot imagine. He feels like he has been hit by a train all the time. He is flush and out of breath like he just got done running a mile. This has been hard for him to not have the stamina he did since he was going to jiu jitsu several times a week.
However, all those symptoms aside, he is 1000 times better than he was this summer. There is no way that he can take as much medicine as he is and feel great. But he has accepted that fact and thinking of how he was this summer, the pain he is in now seems livable compared. We aren’t sure why symptoms are returning, but we are taking it day by day and one doctor’s visit at a time to manage what we see. At least this time, they seem to be paying attention.
He is doing his best to be present and awake for our family. He does all of the kid carpooling and activity taking. This is the first season since we have been together for almost two decades that I have seen him put energy towards a hunting season. He is enjoying scoping out deer stand spots and being in nature. (Now if he could just hit a deer at some point…) He is back at working on house projects and our homestead stuff. He built an extension on our chicken coup, and of course that means we needed four more chickens (no excuse for chicken math).
The kids don’t seem to notice the illness now since it seems much more invisible due to it being more about pain management at this point. They just think, “Dad is back.” They love having him present all the time even if he happens to fall asleep more.
It is interesting to see how life just moves on. For the most part we are moving forward. But there are moments where I am still stuck in my tracks and the wind is knocked out of me realizing how fleeting all of this can be. While there have been positives over the last few months like seeing the tumors downsize, I would be naïve to think that he is cured. We have just stabilized things for now. We are able to move through our life more “normally” but there are costs to it, and it is more of a burden for Tom and I to carry together.
But all in all, I am thankful for these past 4 months. It was more time together that I didn’t think we would have back in July. So while it still sucks to watch him be in pain, or to keep track of the hospital visits and medical conversations, I do feel blessed for the continued time we have here.
This past week, I started a devotional about Job. It has been a humbling time with God. I have cried with each entry grappling with the uncomfortable reality that suffering is a part of the human experience. The story of Job has been teaching me that resilience in the face of adversity is a powerful act of faith. It invites us to embrace the complexities of life and to maintain our relationship with God, even when answers elude us. Through Job’s journey, I am re-learning that enduring faith can illuminate our path, providing hope and strength amid life’s darkest moments. If I have been taught anything about life in this last year, it is to hold on strong to my faith. The diagnosis felt like we were stepping into a miracle. The days afterward felt like we would be able to return to our old selves. But the funny thing about life is that we are never again the version of who we were yesterday. Being through this with Tom, has been dark and twisty, and it still seems so cloudy some days. But through faith, we are able to move through it and be present in what we do have. Anyway, it has been a great devotional to read and watch interviews connected to it to remind me to be thankful and truly present in my faith. Doing so keeps it from seeming so dark most days.
I have had this post in my draft for a couple weeks. Tom is feeling much better, so I pondered whether I should post it. I didn’t want to make what was happening to Tom about me. However, as I kept rereading my thoughts during this time, I wondered if others would resonate who have had to be the caretaker. When there is a medical crisis, there is more affected than just the person in the center. And as it should be, the focus often is on the person going through the medical situation, but the family is very much in the thick of it. Many folks have asked how we have been navigating this, so I figured I would share how it has been for me and the kids through Tom’s health journey. It’s a lot more than what you would get if you asked me in person, so I hope that you are ready for more than, “We are making it and surviving.”
In short, the kids are resilient as all get out. They have been real troopers through all of this. I feel like we have been appropriately transparent with them. Tom’s decline was very apparent, so it was not something we could ignore with them. Because Tom has been an active dad, his bedrest and symptoms could not be hidden. So we have had to be honest with them over the last few months. There were many days where our nightly or weekend plans had to shift suddenly to get Tom to the hospital. I hate that they had to get use to us just dropping everything with an unknown return time/date. So because his health was unavoidable to see, we did have some very hard conversations about his health.
We talked about doctors, medicine, and yes we talked about death. Tom and I decided that we did not want the kids to be blindsided if something dire were to happen, so we wanted to be sure we kept them updated as the days, weeks, and months went on. Again, we tailored it to our kids, and gave them space to feel feelings and ask questions. We have tried all along to be open with our kids, and we felt it would be untrue to who we were to keep them in the dark.
For the most part they have taken things like champs. They haven’t complained about our lost vacation or other summer plans. They have taken on different responsibilities when asked. I have had several conversations with them about how we are a team, and sometimes that means we have to do more when a teammate cannot. While some of those moments have not been my proudest, and I may have guilt-tipped them into better behavior because I was going at it solo, they really have been rock stars. They really have stepped up to fill a need as best as their young souls could do.
It hasn’t been all roses, and we have tackled more emotions and dynamics in parenting than I figured we would in the first decade of this journey.
Wally is our wildest three year old. His personality and temperament is nothing like we experienced with the other two. Not having Tom to be physically present has made it harder, and I think Wally can sense that we are a man down so he pushes buttons more than anyone I know.
Daphne has had some dark moments. She has asked some of the hardest questions. It is a punch to the gut when your seven year straight up asks if her dad is going to die or come home on a regular basis. I barely can process it myself let alone help her process it. But we waded through the mess, and I have to say I am glad that we were honest, because it has helped us address different emotions and how we can lean on each other. Daphne is my most complex with emotions and we are often on a rollercoaster of feelings, so having moments where we can just be sad together have been healthy for us to process being human even if it was dark to sit in the hole together.
George is Tom’s little sidekick, so I would have thought he would have taken it the hardest. He is clingier than he ever has been, which is saying something. The boy’s love language is physical touch, and he needs to be in others spaces all the time. However, George has been phenomenal through all of it. He has been like the cheerleader we all didn’t know we needed. He prays for Tom regularly, and he is always talking so positive that the doctors were going to find him a cure. He talks to Tom regularly about what they are going to do once Daddy has his energy back. It’s like he was willing it into the universe as the only option. He has made comments to me like, “Mom, I am going to take care of you and make sure you aren’t alone until Daddy is back.” George has been the beacon of hope the whole time. He has had his tearful moments, but it was like he always knew Dad would just get better.
We made sure their teachers and school counselors were aware of what was going on, and they wrapped them in love and support while they were at school. While it was hard to communicate the scariness the kids were experiencing this summer, we are very fortunate to have the educators that we do to help pour into our kids.
We have also tried our darndest to still let them be children. This is heavy and awful, and even though we have been honest, we also didn’t want to rob their childhood. We have been trying to keep up with our schedule as much as possible with their activities and camps, and our nightly dinners together. We play UNO every night before bedtime, and we are always curating a list of new movies for our weekly movie nights. We have gone swimming, ate McDonalds, caught fireflies, jumped off a dock into a lake, and took day trips around the state. It has been my mission to still do a normal activity with them every day. There have also been days where bedtime didn’t exist or there was more screen time than not; all things we will navigate scaling back once school starts. While they will remember their dad being sick, we didn’t want it to be the only thing. We felt it was important that while we can be sad, we can also choose joyful things in the midst of grief.
Maybe infusing the normal into their days was just me trying to hold it together for my own grief, because I was barely hanging on when I would have a moment to myself.
I feel like I was living in two worlds. One that has been standing still with Tom and the other that has been moving around us. It seemed weird and callous to keep doing normal things as he was getting worse. I felt pulled in so many different directions with work, the kids, and taking care of Tom. And I feel guilty choosing any of them over others. It is like none of them seemed like the right choice when I chose it. Where to spend my time may seem obvious-Tom right? But anxiety and stress is a fickle thing, and can often make us not think in reality. So anytime I was spending time with Tom, I felt like I was disappointing someone else. And even if you saw me out, my mind was racing to try to act normal to meet expectations in every situation to deflect all the emotions off. My mind was not able to be present in any situation, and I felt fatigued with the heaviness and decisions of where my time needs to go.
Being a care taker of a loved one is a lot. Over the past few months, I had become an in-home nurse for Tom. I would do it over and over again in a heartbeat, but that doesn’t mean there isn’t a toll on you. You are constantly putting someone else’s needs over your own. And everyone says, “You need to make time for yourself.” But that is not super easy to do in this situation. He has needed a lot of physical attention, and you can’t always put that on the back burner because you need some “me time.”
The role of a caretaker is often described in glowing terms—selfless, compassionate, and unwavering strength. Yet, beneath the surface of these “noble” attributes lies a gravity that can be overwhelming. I have been angry, impatient, and at moments unkind because the stress took over my body. It is a lot of coordinating from the medication, helping manage symptoms and comfort options for Tom but also paying attention to the kids’ needs and house responsibilities. I had to literally carry my 39 year old husband to go to the bathroom. And it’s not just about the logistics; it’s about holding space for the emotional and psychological needs of everyone in the house as well. I was trying to remain as calm as possible on the outside for Tom and the kids. They already had enough to focus on, and I didn’t need them to worry about me. There have been many compromises, and while ultimately they were choices I made, they felt like we lost things that are normal for a reason that was out of our control. With any move, I have had moments of not feeling like I am doing enough in any space that I am in.
I felt anything but strong and selfless. I didn’t ask to do this, but here we are. That doesn’t make me special, it is just the life that were dealt with. Each day, I was confronting the fragility of life and the reality of an impending loss. This constant reminder of mortality can lead to a spectrum of emotions—and I have felt like I was on a tilt a whirl all the time. I would wake up in the middle of the night to check to make sure he is breathing, and I knew I was watching him die. There’s a unique kind of sorrow in watching someone you love decline, knowing that there is little you can do to change their fate. Despite that, the care can easily become all-consuming as you try to anticipate the needs that could impact quality of life.
There were also moments where I wasn’t in control of my own emotions. I would just suddenly start crying thinking about who was going to take care of all the things Tom does for us. I had intrusive thoughts hit me all the time on how life would look like without him. My anxiety took over me as I would spiral thinking about our basement flooding or how I could enjoy 4th of July without Tom. Would I ever be able to look at fireworks without crying? My brain went into overdrive with all these silly scenarios of how I would be able to do house projects on my own. We have never had to hire someone to fix things at the house, so what does that even look like? And I would spiral with each what then scenario. Since May, there was not an hour that passed that I didn’t think about Tom dying and what that would mean for us left behind. He has always done the house things and can fix anything, and thinking about the responsibility of those things left me grossly unprepared, and then I would be upset with myself wasting time worrying about this frivolous stuff. I started documenting on a notes page or videoing Tom giving me instructions on different house things so I could have them as reference.
I found myself crying in the bathroom all the time. It has been very dark in my head to try to manage all the pieces. The world that once felt familiar and secure now seemed disorienting and surreal. The routines, plans, and shared dreams are suddenly overshadowed by an overwhelming sense of loss. As you navigate through the days, it can feel as though everything is in flux while you’re standing still, struggling to catch your breath. I found it hard to juggle all the things myself, because I felt two very contrasting feelings. One, I didn’t want to be a burden to anyone. That is deeply rooted in my soul from my childhood so it is hard to shake. And two, I felt guilt that I was not “enough” to handle all of it. It was a sick disoriented view that I was a failure if I couldn’t just pick myself up and fix everything. It has been very humbling to hit points where I knew asking for help was the only way to dig out of this pit. (And spoiler alert, people showed up and showed out to help…)
Then there is the feeling of realizing you have lost your partner in the big stuff too. Tom’s memory was starting to be affected by all of his symptoms, and there were weeks were he could not help me make decisions or be a voice of reason as I was processing things. A lot of change was going on around me, and I just felt so alone. I didn’t want to burden him with my worry or he just was in so much pain that we couldn’t focus on anything else. We have been together for 17 years, and it was like all of a sudden the person that I lean on the most wasn’t able to show up in the same way. I had moments of being paralyzed by all the decisions I had to now make on my own. The guilt was overwhelming thinking I was making the wrong decisions all the time. I found myself just stuck looking around waiting for someone else to make the call.
I am sharing this for a few reasons. One I think that we are able to connect on a deeper level when we are able to be vulnerable. This has been heavy and weary, so getting it out, I hope not only releases something for myself, but also highlights that people are often going through more than we can ever realize. I am not sharing this to get pity or accolades at how strong I am. When you are put in this situation you feel anything but strong; you do it because what choice do you have? My “strength” has only come because of prayer and faith that there is purpose in God’s plan. I have been processing a lot of this in therapy, and I have been working a lot on trying to share my story more and bringing others in for help. There are always layers behind people. Coming back to this writing space that I have built over the years, is a way for me to shed some of the weight of all of this. I have been fighting the duality of wanting everyone to know what we are going through to temper expectations and provide grace, but also wanting to keep everything close. There was fear that I would that I would break down in inappropriate situations if I talked about it, and I wouldn’t be able to real it back in. I was like a wound up jack in the box trying to keep my lid closed and sweet music playing. I wasn’t sure how people would react once it popped out of me, and the last thing I wanted was the pity looks. I didn’t need “those looks” to remind me how awful our situation was. But at the same time, I was starting to crack in different areas because I was just trying to make it to the next thing. I knew I needed help, but didn’t know how to accept it or what kind of help would actually help at the same time. It just felt like another decision I would have to make so I avoided sharing. Ultimately, I didn’t mind people knowing, but it has been weird navigating sharing this much about our life that hits deep emotionally.
These past few months have been scary, exhausting, debilitating, and soul-shaking. It has also been extremely humbling and a stark reminder about the shortness of our time here. There have been people who have reminded me of the importance of community and care. I have been overwhelmed by the generosity that folks have shown us, and I am not sure that I will ever be able to truly thank everyone who showed us love through this. Through my kids, I have been shown how sweet the simplicity of joy can be. And also that sometimes we cannot have the joy without experiencing sadness as well. I have had to come to the realization that enjoying things and creating happiness isn’t at the cost of my feelings for Tom, and that we weren’t already moving on without him.
Now that Tom is home and on a path to better health, I am working on trying to find peace and balance in it all. Just because he is getting better doesn’t mean that I can just turn the emotions off and everything goes back to normal. I am also terrified that this new path will stop working like everything else has. This is part of us, and that will take some healing to work through. I am still going to therapy and pray constantly. Both are teaching me that accepting myself as a work in progress is not a sign of weakness, but a testament to my commitment to approach myself with patience and compassion. I thank God that we have new answers for Tom, and I know this is only part of our story. I know that joy is coming though this.
Tom ended up in the hospital this week. It was a mix of emotions of being scared at how much he has declined recently but also a sense of relief that he would be watched by medical professionals more closely.
It has been a long road to get us to here. This is a really long post, so buckle up. I am not a medical professional, so this is my interpretation of everything.
Tom’s symptoms started in 2021.
At the time he was having really bad heartburn and gut issues. It was also around this time that he had gum pain due to severe inflammation in his mouth. He was referred to a rheumatologist and started a path for treatment for seronegative rheumatoid arthritis. The way it was explained was that his system was producing anti-bodies that attack his body causing the soreness and inflammation. It felt like we had a diagnosis and a treatment.
However, over the next two years it was an ordeal to find the right medication that would treat his symptoms and not make him even more miserable. He went on different immuno-suppressants, but what this ended up doing is giving other things free reign to rule over his insides.
His heartburn grew to vomitting regularly. He was physically sore and arthritic all the time. He started trying to narrow down foods to see if there were trigger foods to the stomach issues. He cut out many groups of foods including his favorite lasagna. Sometimes it seemed to help, other times it seemed like he was not able to eat anything that didn’t become a “trigger” food.
The symptoms just kept growing in intensity and in oddity.
In November 2022, Tom suffered a stroke in his lower extremity. Fortunately, the stroke showed that he had testicular cancer that we may have not found until it was too late. He had a fairly immediate orchiectomy. Unfortunately, because he had to be on antibiotics due to the surgery, it messed with his immuno-suppressant medication for the seronegative rheumatoid arthritis. These two do not mix well together. So his immune system had to be rebuilt in a way after this surgery.
Tom was still on the mend, when our house got hit with a bad stomach bug in February of 2023. It turns out we all had norovirus, but it hit Tom with a vengeance. I will not forget being in the bathroom getting ready and watching him puke blood everywhere like he was a fire hydrant before I dragged him to the hospital. Due to his compromised state already, norovirus almost killed him with the amount of blood he was losing. It turns out that he had a stomach ulcer that ruptured when he got the stomach bug that they rest of us cycled out of in 12 hours.
Around the fall of 2023, Tom’s immuno-suppressant medication stopped being affective. There is a shelf-life to some medications, and it seems that his symptoms with his chronic nerve pain didn’t want to play nice.
He started narrowing down even more foods in his diet to get as clean as possible. It seemed like every day he was weeding out foods that he thought was a trigger food. He made bread from scratch to not have preservatives and made beef tallow to use as cooking oil to get away from seed oils.
Some days were good, but the very next day he would not be able to walk.
The beginning of 2024, unbeknownst to us at the time, was the start of a steep decline.
We all passed around a cold early in the year, and again while the rest of us got over it, Tom’s turned in to walking pneumonia. And it lasted for months.
We had approximately 15 trips to the ER to receive urgent care, but he would just be ping-ponged back and forth between the ER and his primary care with neither taking ownership of handling his medical needs. Most of the time he would not even get any fluids and would be turned away without any medical intervention. There was one time I went with him that they tested him for COVID and Flu which came back negative, and we begged for fluids because he had been puking. And they denied the request, until he started puking in the ER. It was just one doctor after another not seeing the severity of his symptoms. Or they would see them but tell him that he should get primary care (he has VA healthcare), or and I quote, ” I don’t know what you want me to do about it.”
After months of not getting better, we finally demanded and begged for scans. Tom was absolutely miserable with the pneumonia symptoms, but he was also experiencing other symptoms and they seemed to increase with each passing month.
These scans came back in May and we received the dreaded call that there were multiple growths in his lungs and esophagus. There were too many for them to count on the scans, but it did not seem serious enough to rush him into surgery. We waited for a few weeks for the next steps.
In June, he had two different scoping surgeries to pin point what was going on with the growths. Were they cancerous or fungal? He had one in his lungs and one in his esophagus. They both came back negative for cancer or fungal, so it is still a mystery why they are there in the lungs. The esophagus turned out to be 75% covered in cavitated ulcers. Which doesn’t help when you are puking daily.
As all of this is happening in May and June, other symptoms were really ramping up:
blindness
paralyzed from the waist down
nerve pain
sores on his skin (they were more like open gashes that would just pop up out of nowhere)
spider rashes
severe weight loss (he has lost 65 lbs in the last 6 months…see the picture above)
It seemed that any time we would go to the hospital, people would treat him like he was a hypochondriac. I mean it does seem unbelievable to be blind one day and a few days later to be normal. It was like we were on a twisted medical rollercoaster that no one would help us get off of.
We have been desperate this summer. Tom and I both have cried in the ER to different nurses and doctors begging for someone to take a holistic look at his situation. We hoped every time we went to the ER that they would admit him. We were denied a referral to Mayo, and felt like we were out of options. I was just watching Tom waste away. He is no longer able to drive. We have canes and a wheelchair, and it was like we were living in hospice care in our house. I started waking up at all hours of the night or coming to check on him in between meetings at work just to make sure he was still breathing.
Eventually we were forced to begin end of life planning. We sold assets, planned funeral music, and had hard conversation about what he wanted if he wasn’t able to make his own medical decisions anymore.
The one ray of sunshine is that a doctor on loan from University of Missouri was brought in to review the scope of Tom’s lungs. During the consultation he stopped and began asking questions about unrelated medical questions. The questions were very strange, but very on point and it almost seemed like he was reading Tom’s mind. Like the were asking the size of his boogers kind of weird…
Little did we know he was a real life Dr. House. He perked up mid sentence and said “You don’t have Seronegative RA and you aren’t on the correct meds. You have Wegener’s Disease” He scheduled the test to confirm for Tuesday. Looking back each of the symptoms I described above could be explained by the Wegener’s Disease, down to his massive boogers. It seemed like there was a light at the end of this tunnel.
But then Monday Tom fainted at the dentist office.
Since the VA hospital here is ALL medical care, they were able to get him to the ER in the same building. This time for whatever reason, the doctor there decided this was the time to admit him.
While a hospital stay is never ideal, it did seem like a ray of hope for us. It felt that someone was finally taking it seriously, and they couldn’t ignore what was happening if they had them in their constant care.
He has had labs daily. He had two more biopsy surgeries: one on his hand where one of the sores was festering and the other on his kidney.
He was eating three square meals a day but he still lost 3 lbs this week, under their care.
But we inched closer to a diagnosis. Two infectious disease doctors flagged the idea of Wegener’s disease or GPA, so all the tests this week were to confirm that diagnosis.
And we finally got it, and treatments have started.
GPA is very hard to diagnose because it is extremely rare, and the symptoms often lead you on a twisty path or they are misdiagnosed which delays the real diagnosis. Most of our doctors had never heard of GPA until Tom walked in. It is one of the only autoimmune diseases that attacks organs with inflammation. So many of the doctors we talked with this week said his symptoms were wild. The symptoms and side affects are out of this world that they are almost unbelievable. The symptoms are so crazy that the doctors don’t know what to do so they only chase one symptom. Even this week, several doctors wanted to him to have a stomach biospy to rule out lymphoma because they were honing in on just the digestive inflammation. Three in 100,000 people get diagnosed with GPA, but many get diagnosed to late because of this. We have been hearing that only about 3 in a million survive because they don’t receive the GPA treatment in time. Once the symptoms start, if left untreated it is fatal within 2-3 years. We are at almost the three year mark. My stomach just drops knowing I was watching Tom die right in front of me.
But we are finally here.
A diagnosis and a treatment plan.
Praise be to God.
The treatment plan is fairly simple once diagnosed. He is on day two getting the right medicine, and he is able to walk unassisted for the first time in months. He is still restricted due to the loss of muscle mass. however the pain that was eating him alive seems to be miraculously subsiding.
Praise be to God.
Thank you to all who have prayed and reached out for support. This journey is no where close to being over. He has a long road to recovery still, but we know we saw a miracle this week.
When you get married, you are full of excitement. There is nothing but celebration around you. You are looking towards your future and you tend to focus on the happiness that is before you. You think about the mundane routines that you will experience together. You dream of the family you are going to make. You think about the LIFE you will have together.
What I didn’t realize 13 years ago when we high-fived our I dos, is how much we were choosing a partner to navigate death with. I mean I imagined growing old with Tom, as I sing the Adam Sandler song from The Wedding Singer. So it seems obvious that when you say “till death do us part” that was part of the deal.
However it feels different when you start navigating that stage of life.
Tom has an illness that will be with him the rest of his life, and can cause life-threatening situations. We have been searching for the past couple years for the right diagnosis as we hone in on different symptoms. He has seen a sharp decline over the past 6 months, but especially over the last few. We are looking at a long road to maintain positive health, but there are still a lot of unanswered questions. Our life lately has been trips to the hospital, surgeries, biopsies, scans, and a carousel of doctors.
I didn’t imagine to be talking about end of life plans this early in our marriage, but here we are.
It is in these moments that I find that I am blessed to be in this marriage. I could easily say “why us?” or think about life if it went a different direction for us. But then I wouldn’t have this marriage as it is, and all that it has given us despite our current valley.
This marriage has taught me about unwavering love.
This marriage has taught me the value of partnership.
This marriage has humbled me.
This marriage made me a mom.
This marriage has given me everything.
Our wedding verse is a constant comfort for me in this time.
It is often in the valleys where we are stripped to our core and made to learn about ourselves and life.
I am constantly learning about compassion as I watch him be in constant pain. Tom has always been the strongest person I know, and it can be easy for me to just expect the same since life is moving around us like everything is normal. I have needed to slow down and be there for him in new ways and try to understand what new support looks like.
Kindness in a marriage should be a given, but it can be hard when the stress is piling up. It can be hard on a relationship to go through any hard time, but even more so when health is affected. Tom feels helpless because this illness has him knocked down, and I feel helpless to fix any of his ailments so I am trying to keep everything else afloat. But that can make it easy for us to be stressed around each other, and it has been a good reminder for us to be kind in the simplest of terms.
Everything about this year has brought us to our knees and humbled us in ways that we didn’t even think was possible. It has made us be vulnerable in new ways as we continue to grow together. As we have humbled ourselves, we have been able to share more depth about each other and our hopes and fears.
When you are dealing with the hardship of life, being gentle is a weird concept. You’re kind of like an eggshell yourself never quite knowing what will break you. You don’t want people to pity you, but at the same time it can be a large weight to bear. You try to make yourself stronger than maybe you really are to just make it day to day. I am reminded of the extraordinary gift of gentleness that we can offer each other in our marriage. Our world is often filled with chaos and noise, the soft touch of gentleness has the power to soothe our souls, nurture our bond, and create a sanctuary of love and understanding between us.
Patience. Deep down, I am not a patient person. I get anxious waiting on others and want to know what is happening so I can prepare. Being a mom definitely has tested me in that, but so has being married to Tom in everyway. He walks boldly in life, and that can be a wild ride for this anxious heart. He joined the Army, became a police officer, and now has this unknown illness that makes me stop in my tracks daily. I have to be ok with waiting a lot in this life. I pray that God grants me the strength to persevere in times of trial, to remain steadfast in times of uncertainty, and to hold onto hope in times of despair. In my moments of impatience and frustration, I have to ask for help to cultivate a spirit of calmness, understanding, and perseverance, even in the face of these challenges and uncertainties.
There is nothing like facing death that makes you realize holding grudges or bad feelings does no one any good. One of the most remarkable aspects of forgiveness is its ability to bring about profound healing and transformation. By choosing to forgive, we free ourselves from the chains of bitterness and resentment, allowing us to experience inner peace. We quite frankly don’t have time to be mad at each other, so it has been really healing to just let things go and return to love.
Because above all else is love. Love is what got us started. Love built this family. Love is our foundation. Love ties us together.
While this year has been full of strife, it has also brought us immeasurable peace as we both have grown in our faith in God. Everything about this has been scary and unknown, but we have put our trust in God to pull us through this. We have been telling each other that God has something in store for us with everything that is happening. We may not know what that is, but we have found peace that this is the life He chose for us and there is purpose in that. We have had to learn to trust in His divine timing.
And for all of this I am thankful. I am thankful that we started dating 17 years ago during our summer jobs at Worlds of Fun. I am thankful that Tom asked to be tied together 14 years ago on the shores of Savannah, GA. And I am thankful that we chose to navigate life together 13 years ago when we got married.
I am thankful for everything because even in the hard, there has been so so much good. And I wouldn’t change anything about that, so I will take all of this hard now knowing we have more laughs and good to experience.
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